Jeff,

I have no problem with keeping our conversation on this website. I too have noticed that it is receiving a high number of views and I agree that maybe someone will see the things that we have experienced and explore with their neurologist the possibility that they too may have one or both of these illnesses.

I believe that in reading about MG I have seen references to juvenile MG especially in babies. I've never read anything about juvenile SPS but again it's so rare and hard to diagnosis. I'm sure I've already told you that my first neurologist immediately diagnosed me with MG even though all my testing came back negative except for striated muscle which is a symptom of both MG and SPS. He was totally unaware of that and after my husband found an article about this and gave it to him he wanted another copy of the article several months later to give to his students (he's mainly head professor of neurology at the college associated with the hospital). That made me feel so comfortable trusting him as my doctor and I knew that I needed to find an actual doctor to go forward with my treatment. It's interesting that my new neuro told me this past week that my first neuro (being primarily a professor) is good at diagnosing and telling you to "hit the road". Which he finally did after over two years. I went for my three month exam and he pulled his chair up next to me and told me that he couldn't cure me or make me better and that he thought I probably had anger issues and it would be good to talk to someone, not a head doctor but maybe a social worker. I thought "heck yeah I have anger issues, my world has been completely turned upside down, no one knows for sure what is going on and you're surprised that I have anger issues".

I have also experenced TMJ like problems about two years ago just out of the blue. My jaws starting popping to the point where I was in so much pain I didn't want to eat. That's when my old neuro started giving me the valium to help with my falling issues it also stopped the jaw popping. I don't have a problem with that now.

I'm also concerned with the problem I might face with the muscle stiffness and it's effect on my bones and joints (especially on us "old folks"). When the stiffness starts to set in as the day goes by, I have a lot of pain in my lower back and legs. It doesn't help that I have two degenerative discs in my lower back from a fall 24 years ago down a flight of stairs. After being on prednisone for about two and a half years, I now have been diagnosed with osteoporosis which is one more problem to deal with and probably has done more damage to my back. Sad to think that the medications that I have to take to function are doing additional problems to my body.

I hope our conversations are helping others. I wish I had been able to find someone with the same issues I had experienced at the beginning of this horrible journey and I encourage anyone who has questions about these issues to join in our conversation.

Best of luck.

Becky
Southern Bell